“The Trisomy 18 Foundation was my life line. The staff there helped me through the darkest days of my life from the time our daughter was diagnosed with T18 until she died and even after. If anyone you know is pregnant with or has a T18 baby, tell them about the Foundation.”

Randall Terrance’s Family

“I have never been so moved by anyone as when baby Randall’s doctor stood in front of the entire room and began to cry in telling us that he would do everything he could to make sure that our Baby made it home for the Thanksgiving Holiday. The entire room was weeping including our Minister. It is a moment in our lives that I will never forget.”

Jonathan and Misty, expecting their second child, had a routine pregnancy. Their AFP baby had come back normal, and no problems had been suspected. The pregnancy, other than being overdue, seemed to be going fine. When Misty was in the 42nd week of pregnancy, a “routine” ultrasound was performed to determine if there was adequate amniotic fluid for baby and how he was doing. It was at this time that it was discovered that baby Randall had a pocket of fluid on the back of his brain and he was breech, neither of which they known previously. This was on a Friday evening and a C-Section was scheduled for the following Monday.

Their Doctor, concerned about their emotional state after the ultrasound, had asked them to come to the hospital to meet with him on November 22nd, the morning after the ultrasound. He was was hoping to offer some comfort that would carry them through what looked to be a very long and stressful weekend.

“I could hardly sleep that night with waiting for every movement of the baby to make sure he was fine. We arrived at the hospital as instructed at 8 A.M., and within 20 minutes of our arrival they hooked us up to a monitor. Suddenly, the baby’s heart rate was dropping from 140 to 70. It was the sickest I have ever felt. I was banging on the machine, telling baby to hang on. We had no idea of what was happening or why. Three nurses came rushing in, prepped me for surgery, and threw scrubs at my husband all while paging our doctor. It was like something out of a movie. We were terrified.”

Meanwhile, Randall’s heart rate continued to be erratic. At 11:37 a.m. that Saturday morning, Randall Terrance entered the world, silently, by c-section. “They took him over to the corner of the room. I kept asking if he was o.k., since he was silent: not a peep. The room seemed so peaceful at that moment, I should have known an angel had arrived.”

“The Doctor kept telling me they were just looking him over and giving him a little oxygen. They called my husband from my side and I heard them say something about a cleft pallet. I remember thinking, ‘that is fine, that is something we can deal with, that can be fixed,’ but I began to cry. I then heard them mention something about his feet. When my husband Randall returned to my side, shaking uncontrollably, I asked him what was wrong with our baby. He confirmed for me that Baby Randall did indeed have a cleft pallet and that he just had funny feet like his Daddy. I remember laughing and then began to cry again as I could plainly see the pain in my husband’s eyes and that he was fearing the worst.”

In the post-op room, their OB/GYN and the Neonatal specialist entered the room with very grim looks on their faces. They sat beside Misty and Jonathan and began to the deliver the most devastating news ever imagined: Baby Randall had Trisomy 18. Misty recalls, “Even as they spoke, I could see their mouths moving, but there were moments of silence. Perhaps this is a defensive reaction of sorts, a built in mechanism so that moms and dads are able to cope with such horrific news. And then I heard them say that Baby Randall would most likely not live for very long. I had never imagined anything this painful, was this my baby they were talking about? Were they sure? How could they know for certain?”

“While all of these questions were screaming inside my head, I could hear someone wailing, a cry like I had never heard before in my life, someone was in deep pain……and then I realized, it was me. It was like an out of body experience. I will never forget that moment: I had never even heard of Trisomy 18, but it was going to change our lives forever.”

“I wanted desperately to see our baby. When they finally did take us to the NICU, I was so overwhelmed by how beautiful he was. Little clubfeet with curled toes, tiny fingers that overlapped, low set elf like ears and oblong head: he was perfect. ‘These special features are not wrong,’ I said to my husband, ‘these are what make our baby so wonderful.’ And to my delight, unlike my firstborn, he looked just like me. That evening we called our Minister and he came to the NICU to baptize our special angel.”

Jonathan’s family was there when the baby results came back confirming the Trisomy 18. It was then that the Neonatal Specialist had the awful task of explaining Trisomy 18 to the family and when he tearfully promised the family he would do his best to help Randall come home. Misty’s family lives in Canada, so they had to break the news to them by phone, which was very painful for all involved. “My little sister, Fonda, whom I am very close to, began to sob when I broke the news to her. It was so difficult telling her that our baby had arrived…..BUT…..then, there was a long silence and then we both began to wail uncontrollably. How I longed for just one hug from her at the moment. How I longed for her to hold my precious child and we could cry and grieve together. “

Jonathan, their older child, was 19 months old. Although he was fully aware that there was a new baby in their lives he was too young to understand what was happening.

Their preparation for taking Randall home was quite different from when they took Jonathan home almost 2 years before. They were advised to hire a nurse to care for him through the night because he had an NG Tube for feeding every three hours and there was risk of apnea and aspiration. They did not have him circumcised like his brother, he did not have his first shots like most babies, and they were told not to take him outside, as the flu season was the worst they had seen in years. They carefully followed all instructions, and took baby Randall home to love him for was long as they could.

Misty writes, “All of my memories of my baby are special. I wish I could somehow bottle them so that not one little detail would be lost. However, I will always remember our special afternoons, while his big brother was napping, when we would have our bath time. I would sponge bathe him and moisturize him from head to toe. He loved it when I rubbed his head: he would fall fast asleep. And then I would have to clean his mouth, as his lips would be so dry from not being fed by mouth. The second I touched his mouth with the warm cloth, his lips would pucker and he would stare at me as if to say ‘Mommy, don’t do that again’. It was so cute I would giggle every time. I loved the personality he was developing.”

Randall’s nurse, Nancy

“Baby Randall’s nurse, Nancy, whom we all grew to love deeply during her time with us, shared with me a poem called Heaven’s Very Special Child. She too has a Trisomy child, born with Down syndrome. Upon meeting her, we bonded immediately as she understood our pain. I will be eternally bonded with her because she loved and cared for my child. The poem reads:

A meeting was held quite far from earth, It’s time again for another birth, said the angels to the lord above. This special child will need much love. His progress may seem very slow, accomplishments he may not show, And he will require extra care from the folks he meets way down there. He may not run or laugh or play, his thoughts may seem quite far away.

In many ways he won’t adapt, and he will be known as handicapped. So let’s be careful where he is sent, we want his life to be content. Please Lord find parents who will do a special job for you. They will not realize right away, the leading role they are asked to play. But with this child sent from above, comes a stronger faith and richer love. And soon they will know the privilege given in caring for this gift from heaven. Their precious charge so meek so mild, is heaven’s very special child.

“I feel it important that I tell the story of baby Randall’s passing. Due to a storm on the night of 25th of January, 2004, our nurse was not able to come to care for Randall. Therefore, I told my husband to go to bed and that the baby and I would be just fine, even though I had a very uneasy feeling about being alone with him that night. The night was long and I was exhausted from being with our toddler all day the day before. I was most relieved to see the sun come up and know that the baby and I had made it through with no incidents of spit up or anything.”

“At exactly 7:50 A.M. I was cuddling Randall on the couch watching the morning news, he had finished his feeding just 20 minutes before but was resting comfortably on my shoulder when I felt his body heave. I waited for the warmth of the spit up on my shoulder, but nothing came. I brought Randall down to my lap, he was limp, his arms fell to his sides. I thought I was imagining things. I put him back up over my shoulder and patted his back gently, then brought him back down to my lap. His color was changing, I reached for the stethoscope and listened for his heartbeat, it was barely beating. I ran to our bedroom and got my husband telling him something was wrong with the baby.”

“As my husband took him from my arms, I was attempting to read the CPR chart posted to our den wall. I watched as my husband breathed life into my tiny baby’s body. By this time, he was already turning blue. Within a few moments he was crying that faint tiny cry and his color was returning. We called 911. They arrived and assessed Baby Randall, while we informed them of his condition. It is important to mention that we were sent home from the hospital with a DNR form (Do Not Resuscitate) as we did not want Randall to go through any unnecessary discomfort and we did not want him to survive only on life support.”

“The paramedics left and we were left with the worst fear of all…..would this happen again? He made it through that Tuesday; with us watching over him every moment and then Wednesday morning it happened all over again, this time with his nurse, at 6:30 A.M. My husband once again breathed life into his tiny lungs and Randall began to breathe on his own. But not for much longer. The following day, we knew that his end was near, his color was horrible, and his breathing labored and at times delayed. The Neonatal Specialist made a special visit to our home and once again had to confirm the worst: that baby Randall was indeed in the process of passing away. He sat with us for a long time and counseled us really on what would be happening, what we needed to do when he finally did pass and what we had to be thankful for. He was wonderful to us.”

“He got to hold Randall one final time, which I will be eternally grateful for. During that very special day, like all the days before, my Mother in Law, Diane, was with us and at Randall’s side. Had it not been for her silent but very strong and loving support, I am not certain I would have made it through. That evening at exactly 9:08 P.M. Baby Randall Terrance passed away peacefully while in his Daddy and Mommy’s arms. I had begged God to take him just moments before he took his last breath because I could not stand to see my angel suffer any longer. I knew God must have needed him and wanted him to come home and I had promised God that when he came looking for Randall I would lovingly give him back just as God had lovingly given him to us.”

“My Mom, his nurse and I, bathed Baby Randall one final time, dressed him in a little green outfit that his Grammie had given him for Christmas. He was the most beautiful I had ever seen him. It was the most difficult and significant thing that had ever happened in my life and I somehow felt very privileged to be sharing this moment with the two other women in his life that loved him every bit as much as I did.”

“On the day that Baby Randall passed away, I had received a package in the mail from my sister Fonda. In the package contained her favorite CD by a group called Train. I had many favorites by this particular group but had not had an opportunity to preview their new CD. I called her to thank her for the package and she asked that I listen to one song in particular, one that I should listen to only when I was strong enough, one that she said she dedicated to Baby Randall and me on the day he was born. The song is called “ When I Look To The Sky”. It speaks of one lost, and all of the things that will be missed by their passing. When my husband and played it we both began to cry and knew that this would be the song played during Baby Randall’s service. That evening he passed on. I find irony in that this CD would arrive the day that my Baby went home to God and that my sister had never mentioned the song before this day.”

“In my hometown of Nova Scotia, Canada, My sister Fonda has dedicated a brick in the building of a much needed facility for under privileged children. It gives me a feeling of fulfillment in knowing that his name will be associated with such a wonderful cause. I feel that he now has a little piece of his Canadian heritage.”

“I am thankful that it was me who was chosen to be Baby Randall’s mommy. I am especially thankful that he survived the pregnancy and lived to be 2months and 7 days old as I am told that many Trisomy 18 babies don’t make it past he first trimester. I can’t imagine what it would have been like not have been able to feel his warmth against me. Not to have heard his little snore while he rested comfortably on my chest. I give thanks for all of the wonderful people we would have never known had it not been for this tiny little being. I am thankful that it was in my arms that he stopped breathing the first time and I am thankful that it was in mine and his Daddy’s arms that he took his final breath. How thankful we are that we were there when that little soul so peacefully entered the world and we were there when he so peacefully left.”

“When we first received the news about Baby Randall’s condition, I just wanted to take him home and hover over him and protect him from whatever may come his way. We were advised to get a nurse as his feeding would be tedious due to the NG tube, but I did not want anyone in my home. We needed privacy, I thought, but then I soon realized we could not do it alone. With my husband working full days and having a toddler in the home and a special baby to care for, we needed help, and I could not protect him from everything, certainly not the inevitable. In retrospect, I would tell all new parents of a Trisomy child to accept any source of help, their families, friends, church and each other. Most importantly, don’t be angry with God. He knew what he was doing when he chose the special ones to be parents of these wonderful children. I feel an incredible need to be in contact with other Trisomy parents, as I feel that our children are somehow related, they are what I believe to be as kindred siblings.”

“For me, I wish I had not lived in denial of what would be the ultimate outcome for Baby Randall. In his second month of life, we had seen a heart specialist. They were able to confirm that his heart was perfect. From that moment on, I truly believed that my Baby would beat all odds. That he would learn to laugh and smile, as he was already beginning to coo and hold his head up like all babies of that age. So, when he stopped breathing the first time, I was in shock. And even though he continued to struggle for air in the coming days before his death and that I had begged God to take him, when he finally did go, I could not comprehend that I would never hold him again. Even now, I have days that I just don’t get it. I have questions, such as, what took him? Did his brain tell his lungs to stop working? Why did his little body shut down? He was doing so well, gaining weight, eating well, no spitting up, slept like an angel, followed our voices. Why did he die? And then my husband so gently reminds me: the reason is Trisomy! This thing I had never heard of, had never met prior to Baby Randall, came into our lives and stole our child. I am coping with each day without him, but I continue to cry Trisomy tears.”

Disclaimer: The content of this page does not reflect the views of the Trisomy 18 Foundation. The Trisomy 18 Foundation offers this space to parents as part of the Support Program. Parents have control over how they tell their child's story as well as which pictures they feel comfortable sharing with the Community.